MS Society drives MS care into future

Today the MS Society unveils a series of radical proposals for healthcare professionals, commissioners, and the third sector to improve health outcomes for people living with MS.

Its new report ‘Improving care for people with MS: the potential of data and technology’, outlines a programme of data and technology driven change it believes could transform the way MS is treated and managed. Failing to better use technology will mean longer waiting times, difficulties monitoring treatments, and increasingly squeezed budgets.

The campaign marks the next step in the MS Society’s digital transformation, following the launch of a new website earlier this year. It has been developed in response to an ‘unacceptably slow’ pace of change in health and care services for people with MS, which affects more than 100,000 people living in the UK.

Michelle Mitchell, Chief Executive at the MS Society, said: “The potential of data and digital technology to improve outcomes in MS is so vast, what’s being used today barely begins to scratch the surface. Sadly, this means the 100,000 people with MS in the UK are still facing needless variations in care and increasingly restricted access to services.

“We hope this report will be a catalyst for change, so we can finally have personalised, coordinated services that meet the complex needs of people living with MS. The third sector has its part to play too, and we’re looking at ways to improve our own digital offering and leading by example. Together, we’re strong enough to stop MS.”

Developed in collaboration with MS healthcare, industry, and technology specialists, the recommendations include:

·Encourage all CCGs to assess use of local neurological services , to increase visibility of people with MS and ultimately improve service design and availability

·Evaluate existing MS digital tools (e.g. apps) to increase effectiveness and enable recommendations from people with MS or health professionals

·Use digital care plans to improve coordination between professionals so they can analyse and share medical data and histories more easily

·Link prescribing data to information about outcomes to help people with MS make better decisions about treatment, and target unwarranted variation in access

·Help people with MS understand how their data will be used to encourage data-sharing

·Bring the international MS community together to agree outcomes measures for MS, and focus on the things that truly matter to those living with the condition

·Ensure all MS-specific technologies are robustly tested with the MS population, with the MS Society acting as a conduit between patients, professionals and technology companies

The MS Society believes that through these new recommendations, healthcare professionals can help people with MS stay out of hospital, and empower them to take greater control over their lives.

Consultant Neurologist Dr David Rog, from Salford Royal NHS Foundation Trust, said: “MS services in the UK vary considerably and, despite the best efforts of dedicated teams, are under increasing pressure. Effective use of data and technology can change that, for example by empowering people with MS to self-manage. As a Global Digital Exemplar, our Trust has been on a real digital journey, and can now not only identify the thousands of people with MS under our care, the treatments they’re taking and how they use the service, but also the people who haven’t been seen, and how we’re performing.

“MS is a painful, unpredictable condition, and if simple changes can so obviously improve efficiency and sustainability, we can’t afford to ignore them – and nor can our patients.”

Jane is in her sixties and has secondary progressive MS. She said: “Technology has had a profound impact on how I manage my MS. A few years ago I lost the ability to use my hands, but I’ve been able to keep my independence because of access to new technology – I can operate my computer by voice control, and have another system that lets me answer the phone and lock the door. Being able to participate in society – whether that’s speaking to friends, accessing news, or doing your own shopping – should be a basic right, but sadly I fear I’m in the minority.

“If you can get a drone to deliver a kindle, it doesn’t make sense that MS services still feel in the dark ages for so many people. Technology can help you better manage your condition and vastly improve your mood, so I hope others don’t have to wait much longer to have the benefits I’ve had.”